Thursday, April 10, 2014

On this day last year, I found myself in the local emergency room with Gavin. There was no reason I should have brought him there - I was completely overreacting. Imagine that. I was guided that day. It was minutes after we arrived that Gavin went into cardiac arrest right in front of my eyes. When I reflect back on that day - I often wonder "what if." What if this had happened while he was in school? What if this had happened when he was at home? What if this had happened while I was driving and didn't notice his heart had stopped in the back seat. What if...

As I stood in the corner of the room in that emergency room - I was in shock. And disbelief. Watching people work on your son - attempting to breathe life into his tiny body - is not something anyone should ever see. But I never thought he would die. As I stood in the corner watching what looked like a movie - a bad one - I thought, "Well, this is Gavin. Every so often we have a huge, giant scare. Every once in a while he scares us and teeters on the edge. But he's Gavin. He always... always... always comes through just fine."

I was wrong.

He left on the helicopter and I prayed that the next time I saw him he would be alive. Just alive.

We met again and he was, indeed, alive. Only to die two - or was it three? - more times. Right in front of us. Once again, we watched in helpless horror until they brought him back again. That night, I held out hope. Gavin and I had been through so many traumatic moments together before this. I felt like this would be another one of those moments.

By the next night, I knew. This time there was no miracle. This time there was nothing I could do or research. There were no strings to pull, favors to ask. It all unravelled that night... right in front of my eyes. It would be four days later when his brain would follow his body and succumb to death.

Gavin was going to die. And there was not a damn thing I could do.

Here we are, one year to the day. And where did I decide to go? Right back to the very hospital that loved him right to his death.

I wanted to make an eye appointment for Brian who has been excessively blinking lately. I could have called a local eye doctor - but we have such a long relationship with Gavin's eye doctor at duPont, Dr. Lehman. When I called on Tuesday to make the appointment, I got lucky when I was told she had an opening on Thursday! I said "OH!" followed quickly by... "oh." It would put us at the hospital on this anniversary. It took me about three seconds in silence before I decided - yes. This was just where I wanted to be on this day.

Brian, Hope and I made a day out of it. We met with Joy from the fund development office (she was at the fundraiser with some other hospital folks last Saturday!) to talk about the money raised and to dish about the event. We met in the cafeteria and had snacks, much to Brian's delight. We stopped in the gift shop - a tradition - and Brian picked out a green light up spaceship and a doll for his sister. We greeted familiar faces in the hallways, including one of the beloved doctors that cared for Gavin in the ICU last year, Dr. Savage and our good friend, Gavin's geneticist Dr. Gripp.

Brian had a great visit with Dr. Lehman. He followed all of the instructions and had a perfect 20/20 exam.

As it turns out, his blinking is due to allergies, most likely. I couldn't see any evidence of allergies - and he doesn't rub his eyes or complain - but when Dr. Lehman magnified 16x, she could see the evidence.

After his visit, we made our way to the chapel - another tradition.

I sat Brian and Hope on the altar for a photo. As I lifted the camera to my face, I saw Gavin. Just last year I took this picture of him. He looked so big and so strong.

I took a deep breath and snapped picture after picture of Brian and Hope.

We made our way to the playground and Hope and I watched Brian run and jump and bravely climb.

Suddenly I heard a chopper coming in for a landing and realized it was just about the same time that Gavin arrived last year. A helicopter - landing with a patient that is most likely in grave danger... yards away from a playground filled with happy children. I looked at the children, including my own, running and playing... surely not considering death in that moment in any way.

Life goes on.

As it should.

Before we headed home, I had to write in the Prayer Intention book... something I always like to do when I'm there. This time, it felt necessary.

One year ago today, my world unravelled.

And each day since it has been Gavin that is stitching my world back together.

Once again your Blog post brought me to tears. Once again a beautiful post. Thank you for sharing Gavin and yourself and you heart and beautiful family. I think of you so often. You truly are an amazing Mother and person. Beautiful

Kate, you are truly beautiful inside and out. You and your family have been on my mind all day. And as i was signing some paperwork and dating it as well, at apprx 1pm it hit me, the 100 watt light bulb went off (the ah ha moment)! I stopped what i was doing and said a prayer for you and your family. Im truly sorry you, Ed, Brian AND Hope have to experience a horrific loss, with Gavin physically not with you. (He will always be with you in spirit as well as in your heart) Good night and remember: kiss the babys more, hug Ed more often and a lil tighter, and please take time for you and take care of yourself. You deserve to have a KATE day. God bless.

Full circle. And see what you and Gavin have accomplished in just one year. You and Ed and Brian and Hope have turned a tragedy into a true celebration of Gavin's life. Well done, thou good and faithful servants. (and hugs for the grieving)

Very beautiful. I have lost two children at the same hospital and it's so very hard for me to go back. I love all the people that helped my children live for the two months they were alive but sometimes I hate that hospital.

Kate,I'm not sure if you noticed this or not, but just wanted to tell you that I did. If you look at the picture with just Gavin in it and compare where is is sitting via the stain glass window behind him and then check the picture with Brian and Hope you can see it looks as if they would have been sitting right next to each other. I do believe Gavin was with you that day as I'm sure he is with you everyday. Praying for your family. Best Wishes! "Hope" is an amazing thing.

Kate, I'm not sure if you realize this or not, but it sure confirms to me that Gavin is always with you. If you look at the picture of Gavin alone on the altar and notice where he is sitting compared with the stained glass window behind him and then look at the picture with Brian and Hope, it appears as if they would have been sitting right next to each other. I truely believe that Gavin is with you always. Praying for your family.

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!